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Charity Spotlight: Emily's Entourage

By EMILY KRAMER-GOLINKOFF

Emily’s Entourage is a non-profit organization that fast tracks research for new treatments and a cure for rare nonsense mutations of Cystic Fibrosis, a fatal genetic disease afflicting Emily and 70,000 others worldwide.

Founded by Emily, her family and friends, Emily’s Entourage is made up of powerful, everyday people who have rallied together to raise nearly $2 million since 2011 to drive high-impact research and groundbreaking collaboration, and raise awareness around the world.

Named a White House Champion of Change for Precision Medicine, Emily’s Entourage funds innovative research in precision medicine at top academic institutions to accelerate life-saving therapeutic advances for nonsense mutations of Cystic Fibrosis. Although nonsense mutations are rare among those with Cystic Fibrosis, they are the cause of one-third of all genetic diseases, meaning advances in this area could benefit not only patients with Cystic Fibrosis, but many other patients suffering from many different diseases caused by nonsense mutations.

CauseWire - Emily's Entourage

But Emily’s Entourage is about much more than just funding research. Building community and shattering silos is at the heart of everything the organization does and that extends to the scientific realm as well. They foster collaboration between leading scientists, physicians, industry, patients and families through scientific symposia and other activities to expedite progress and close in on the cure. In addition, Emily herself has donated millions of her own cells for research around the world. In June 2016, she became the first and only person in the world to start an innovative combination therapy trial at the University of Alabama at Birmingham. Brokered by Emily’s Entourage, this trial proves that patient advocacy organizations are uniquely positioned to be disruptors that expeditiously drive critical advances in medicine.

In recognition of their paradigm-shifting efforts, Emily’s Entourage has been featured in CNN.com, People.com, Time.com, Yahoo Health and other local and national media outlets and Emily is an internationally recognized patient advocate and speaker. Learn more and donate at EmilysEntourage.org.

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